Centering and collaborating with community knowledge systems: piloting a novel participatory modeling approach

Background Systems science approaches like simulation modeling can offer an opportunity for community voice to shape policies. In the episteme of many communities there are elders, leaders, and researchers who are seen as bearers of historic knowledge and can contextualize and interpret contemporary research using knowledge systems of the community. There is a need for a systematic methodology to collaborate with community Knowledge Bearers and Knowledge Interpreters. In this paper we report the results of piloting a systematic methodology for collaborating with a community Knowledge-Bearer and Knowledge-Interpreter to develop a conceptual model revealing the local-level influences and architecture of systems shaping community realities. The use case for this pilot is ‘persistent poverty’ in the United States, specifically within the inner-city African American community in Baltimore City. Methods This pilot of a participatory modeling approach was conducted over a span of 7 sessions and included the following steps, each with an associated script: Step 1: Knowledge-Bearer and Knowledge-Interpreter recruitment Step 2: Relationship building Step 3: Session introduction, Vignette development & enrichment Step 4: Vignette analysis & constructing architecture of systems map Step 5: Augmenting architecture of systems map Results Each step of the participatory modeling approach resulted in artifacts that were valuable for both the communities and the research effort. Vignette construction resulted in narratives representing a spectrum of lived experiences, trajectories, and outcomes within a community. The collaborative analysis of vignettes yielded the Architecture of Systemic Factors map, that revealed how factors inter-relate to form a system in which lived experience of poverty occurs. A literature search provided an opportunity for the community to contextualize existing research about them using realities of lived experience. Conclusion This methodology showed that a community Knowledge Bearer can function as communicators and interpreters of their community’s knowledge base, can develop coherent narratives of lived experiences within which research and knowledge is contextualized, and can collaboratively construct conceptual mappings necessary for simulation modeling. This participatory modeling approach showed that even if there already exists a vast body of research about a community, collaborating with community gives context to that research and brings together disparate findings within narratives of lived experience. Supplementary Information The online version contains supplementary material available at 10.1186/s12939-023-01839-0.


Inputs:
• Diversity of lived experiences in community Outputs: • Series of vignettes or narratives Roles: Facilitator to introduce session and process; Community member or key informants to voice lived experience Steps: Each of the following can be adapted to match local vocabulary and language of the community. The facilitator introduces the purpose of the activity and the process of developing a vignette. The following may be one way to do an introduction: • INTRODUCING THE PROJECT: This project hopes to understand "poverty". Our part of the project is about hearing about and recoding your life and experiences. We call your story your "voice". Your "voice" is your reality and includes the context of your story: what are the things before your life and during your life that made your story the way it is? Your "voice" also means how you interpret your story and what your story means. Your "voice" also means how you want your story to affect this work and the world around you. Your "voice" includes how you want your story to be told. If you think your story can be transformed into a chart, one way we can tell your story is by transforming your story into a chart form. We would work with you to put your story into a chart. • Putting your story in the form of a chart can be useful because that chart shows people the causes that lead to effects that shape your story. People can take those charts and turn them into a software that we call "policy simulation software". This means that your story can be made part of a computer program that can allow you to show people how their decisions impact your story. This can be a positive or negative impact. You can share this software with others in your community and with people who make decisions that can affect your story: decision makers, policy makers, government, non-profit organizations, and others. You or others from your community can use the chart of your story or also the policy simulation software to advocate for resources and services that make sense to your community and its realities. Includes both an identification of barriers as well as an asset framing approach.

Materials needed:
• Voice recorder • Laptop • Notebook or blank paper • Pens or pencils

Inputs:
• Series of vignettes or narratives Outputs: • An enriched series of vignettes or narratives Roles: Facilitator to introduce session and process; Community member or key informants to use lived experience to add to and provide feedback on vignettes Steps: Each of the following can be adapted to match local vocabulary and language of the community. The facilitator introduces the purpose of the activity and the process of enriching vignettes. The following may be one way to do an introduction: • What does "health of the mind or heart or spirit" mean to you?
• What are conditions that you may have experienced that hurt or helps the health of your "mind or heart or spirit"? • How has the health of your "mind or heart or spirit" changed over time? o The facilitator goes through each sentence or discrete thought in the narrative or vignette and uses one or more of the following prompts to explore the system shaping the lived experience of the person and their community's realities: ▪ What led to that particular situation being described? ▪ Reflection on the cause of the particular situation being described. ▪ Reflect on the impact of the particular situation being described. ▪ Reflect on questions on the extent to which that particular situation causes or is caused by each of the elements in turn from the Williams-Mohammed Framework ▪ Explore each of the following topics from the Williams-Mohammed Marginalization and Health Framework (see body of article for illustration) as leading to or being the result of connections made in the segment being explored of questions on the extent to which that particular situation causes or is caused by each of the elements in turn.
• Impact of social, economic and other forces on self (e.g. internalized marginalization and discrimination and sense of self, aspirations, expectations, relationship with: policy, systems, etc.) • Discrimination, inclusion, identity (e.g. othering, ideology of inferiority, institutional, cultural) • Individual marginalization or discrimination • Physical marginalization or separation from resources / opportunities / advantages or advantaged communities • Stereotypes, Implicit and explicit bias, stigma • Socio-politico-economic forces on community • Social, economic, and other forces that shape the community (perceived or actual) (e.g. history and historical events, place and environment, political, legal, economic, religious, cultural) • Impact of social, economic and other forces on community structure (e.g.
family structure, segregation, displacement, disenfranchisement) • Impact of socio-politico-economic forces on individual resources • Individual and collective resources, social resources • Impact of socio-politico-economic forces on community resources • Impact of social, economic and other forces on community resources (e.g. access to resources, transportation, quantity and quality of health, access to healthcare, income, employment, underemployment, wealth, incarceration, civic engagement, other determinants of opportunity)

Narrative / Vignette Analysis Script:
• Context: After narrative / vignette is recorded and enriched, narrative analysis can begin relationships that can be thought of a certain type of 'category' of experiences? What is the shape of the conceptual model as we synthesize together the relationships we note within each vignette into an 'architecture of systems map' of relationships that represent the spectrum of vignettes? o The above is an iterative approach between analyzing content and letting output of the analysis guide generation of additional content.

Architecture of Systems Conceptual Model Building Script:
• Context: After conducting narrative analysis, the facilitator will have summarized and visualized the relationships surfaced in the narrative analysis effort. This visualization represents the architecture of systems conceptual model. Now the architecture of systems conceptual model is examined with the participant to ensure that it accurately represents their narrative thoughts. o Validated architecture of systems conceptual model • Roles: Facilitator to introduce session and process; Community member or key informants to voice lived experience • Steps: The facilitator presents the architecture of systems conceptual model and explains that it is a visualization of relationships identified in the narratives from previous sessions. The facilitator goes through each factor and relationship and asks the participant if the way it is represented accurately reflects their experience or how else the factors or relationships can be modified.

Architecture of Systems Conceptual Model Augmenting Script:
• Context: After validating the architecture of systems conceptual model with the community to ensure that it accurately captures the relationships the participant had intended to signify in their narrative or vignette. o Augmented architecture of systems conceptual model • Roles: Facilitator to introduce session and process; Community member or key informants to voice lived experience • Steps: The facilitator presents the validated architecture of systems conceptual model and explains that some of the relationships within the model may have been studied by others in their community. This activity presents an opportunity to use that knowledge base to add or improve or add citations to the conceptual model. The participant is then guided to do a literature review (e.g. literature search, "snowballing" additional studies from initial citations). The participant then annotates the conceptual model with the citation and a note including any information related to quantifying relationships. In the process of the literature review the participant may modify or add to the conceptual model.

Architecture of Systems Conceptual Model Annotation for Agent-Based Model Building Script:
• Context: After augmenting the architecture of systems conceptual model with the a literature review, parts of the model can be annotated for use as building blocks of an agent-based model. o Agent-based model building blocks • Roles: Facilitator to introduce session and process; Community member or key informants to voice lived experience • Steps: The facilitator presents the augmented architecture of systems conceptual model and explains that the model can be turned into a simulation but requires a few pieces of information to be attached to each of the factors. For each factor the facilitator would elicit the following information from the community member to the extent possible (https://www.ncbi.nlm.nih.gov/books/NBK305917/): o PROPERTIES: characteristics of individual agents (such as sex, age, disease state, impairment, disability, wealth, debt, employment status) o ACTIONS: in relation to the factor under consideration, what are the repertoire of specific behaviors that agents can perform within the simulation? (e.g. using public transport, moving around the environment, eating food, smoking tobacco, communicating information to a neighbor, forming a friendship tie) o RULES: o What are the rules that connects each factor with its cause? What are the rules that connect each factor to its effect? How do agents relate to each factor: what choices can they make? What properties of each agent is updated? How do the agents interact with the environment or with each other in relation to the factor being examined? o What is the current or past value of properties (agent's own properties, those of others, or those of the environment) that forms the input and that needs to be updated for each unit time? o Over time, how does factor under consideration relate to agent properties that are important to be updated (level of function, independence, quality of life, health care use, etc)? o TIME: what happens with each pass by the computer through the set of instructions that embody the simulation? o ENVIRONMENT: the context for agents and their interactions in the model: geography, agent types with their own properties, actions and rules, and how they may change with each change in unit time. These would be considered in the context of the particular factor being examined: what type of environment is necessary to represent the particular factor and its relationships being examined?